“Happiness is not the absence of problems but the ability to deal with them.” -Unknown

Yesterday, Rheumatoid Arthritis Guy removed all of the books from the shelves in his home office. (Operation Repaint Office slowly continues to move forward!) During this process, I came across a journal that I had forgotten about. I had not read the words in this book since I wrote them a few years back.

A little bit of background. I had been living with rheumatoid arthritis for a few years, although I did not know this to be the case for certain. I had already gone through multiple extended periods where I was losing the use of my left knee. The pain continued to get worse by the week. When I wrote this entry, I had already visited my first rheumatologist, and we were getting closer to my final diagnosis.

I can still remember both my happiness and sadness when I wrote these words.

On one hand, I was finally making a big step forward. After so many years, it finally seemed like figuring out what was going on was within reach. On the other hand, I was still struggling with my denial – so much so that I hid this journal behind a stack of books as soon as I wrote this journal entry. (This is the one and only entry in this journal.)

June 26, 2006

I am sick. Until now, I don’ think I had actually actually admitted that I was sick. I knew that something was wrong and that I didn’t feel well, but I hadn’t accepted the root premise that I have an illness. Now that I have done so and with a final diagnosis soon to be received, I can now work on getting better. I must accept that the future will have ups and downs. I can begin to distinguish my symptoms under pain and fatigue, and begin to understand my symptoms a little better and begin to stop the suffering caused by confusion. Today is my first day of making myself feel better, both physically and emotionally.

It’s sort of funny that I stumbled across this journal entry yesterday, because recently I have been thinking a lot about what it means to get better – especially when living with a chronic illness. What does it mean to get better? Thanks to reading this old entry, I have begun to realize that getting better means a lot of different things at a lot of different times.

In the years preceding the above entry, before I was even able to accept the fact that I was sick, getting better used to mean only one thing to me: do not accept the fact that something is wrong with my body. Sort of like the logic tests we used to take as kids, it went something like this. 1. My body hurts…might something be wrong? 2. No, nothing is wrong with my body…I am not sick. 3. Everything is okay, as long as I don’t accept that I am sick.

I am better!

Looking back with the benefit of hindsight, I can see how ineffective and counterproductive that thought pattern was, especially as my symptoms gradually got worse. But you know what? I own this period in my life, and even though I was in almost complete denial of my illness, this represented the first step forward on my road to acceptance.

During the second major stage of my life with rheumatoid arthritis, I had finally overcome of of the biggest hurdles – I accepted the fact that I was living with a chronic illness. With the final diagnosis of rheumatoid arthritis that I received a few days after writing the words above, there was no going back to that initial stage of denial. I have RA, and I have to learn to live with it. Up until a few months ago, my new concept of getting better meant one thing: get rid of the symptoms (i.e. go into remission).

I can begin to see a pattern here. While I had accepted the fact that I had rheumatoid arthritis, I still had not fully accepted what this meant for my life at the present and for my life going forward.

For years, I operated on the premise that if I did absolutely everything necessary in order to take care of myself, that my rheumatoid arthritis would go into remission and that life as I knew it before RA would come back. The time between flares when I had no disease activity could last for months. (I even had one period that lasted almost a year.) I was in heaven! If this is what living with rheumatoid arthritis is like, it’s not that bad. Better yet, during 90% of the time I would actually return to a state of semi-denial, and pretend that I didn’t have RA.

I am better!

During the last year, which I consider my third major stage of living with rheumatoid arthritis, things flipped around almost completely. Instead of being good 90% of the time, I now actually felt bad 90% of the time. As bad as things actually got, I still would find myself holding on to a little bit of denial. With full-blown symptoms and mobility problems, one can wonder how much denial can actually be held on to. Quite a bit actually. In my case, it was denial of how much pain my body was actually in. I knew I was in pain, but I still could not wrap my mind about how bad things actually were.

It has been during the past few months in which I have begun to focus on my emotional ups and downs, in addition to my physical ups and downs. It’s funny in a way…the closing line of my journal entry from a few years ago states as much: “Today is my first day of making myself feel better, both physically and emotionally.” I think I have been doing so during the past few years, but my emphasis was always on the physical. Now, I give my emotional self equal time to hurt and to heal. Doing so has allowed me to become a more balanced individual. This has also given me a lot of inner strength as I continue to move forward.

You put your arthritic finger right on a huge problem for us in the disability movement, Rheumatoid Arthritis Guy!

Why are services so poor for chronic illnesses? Why do doctors get bored with us? Why aren’t we better advocates for the changes that will make life easier as we go about our day? Why are we embarrassed to use canes or wheelchairs, even when they get us around with less fatigue and pain?

Because we want to be “better”
Because society wants us to be “normal”
Because it’s easier for everyone if everyone with a disability pretends as hard as they can that there’s “no problem”

So, we have money for research for The Cure, but little for research for computer keyboards that work for people with arthritic fingers. There’s many examples of this.

RA Guy,
I feel like you wrote this for me today. I feel like I have gone through so many of the stages you mention here and “I am better” too. It takes a long while of dealing with this disease physically before we can allow ourselves to deal with the emotional side, but when we do, it feels good. It feels healing.

I have finally come to the realization that my joints will always be my weak point just as the heart or stomach are for others. Knowing this helps me to REALLY enjoy the good days and to find positive ways of dealing with the bad days (well, that is the goal anyhow, right?). As much as I dislike having RA, I also don’t know that I would ever wish that it wasn’t a part of my life. It has made me who I am and I like that me. “I am better.”